Constant bloating feeling?: Has anyone had a... - LUPUS UK

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Constant bloating feeling?

minniish profile image
44 Replies

Has anyone had a constant bloating feeling, whenever eating anything. I do not indulge in food and I am only on hydroxycloriquine. The weird thing is that since Iv come of the steroids in October I feel the bloating feeling has become even more constant and I feel I am gaining weight (my weighing scale an't working so I cant check if I have but I feel I am)???

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minniish profile image
minniish
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44 Replies
Tonkawoman69 profile image
Tonkawoman69

Hi,

I havnt been on steriods since 2012. I have recently been getting lots of bloating and I look 9 months pregnant. Its feels like im gonna burst. I also am suffering terrible reflux and its just burning my throat. Ive now got thrush in my mouth. It must be terrible for you. I definatly can sympathise. Do you get reflux or up and down bowel movement? Or both? I would be interested to know. Im a APS sufferer.

Hope things get sorted might be worth discussing with your doctor.

Take care

Andrea

minniish profile image
minniish in reply to Tonkawoman69

thanks, i will definitely go to the doctors and tell my symptoms,I same do feel like im going to burst as well as not having much bowel movement and feeling constipated all the time i guess.

jackjack2 profile image
jackjack2 in reply to Tonkawoman69

I am exactly like you. I am so uncomfortable all the time x

dgleds profile image
dgleds in reply to jackjack2

I agree

AnaH01 profile image
AnaH01 in reply to Tonkawoman69

You should probably try eating about 15 grapes whenever you feel acid/burning; you immediately feel the difference after eating the grapes. I'm on prednisone and prednisone really messed up my stomach but grapes have seriously helped. Idk much about controlling the bloating but I strongly recommend you try grapes for the acid and burning. You should also get checked out by a doctor and ask him about natural remedies... I'm barely noticing this post has 2 years 0.o

tremarel profile image
tremarel

Yeap I am so bloated all the time! It's just getting me down. As soon as I put food in my mouth I look pregnant. I've been in steroids over 30 years now. Recently I've been having uncontrollable diahorea so have to go & have a colonoscopy & gastroscopy. My stomach & all my abdomen is hurting all the time now. I was told a good few years ago I had IBS but if this is what's causing all my pain & discomfort I think I'll have to stop eating. I really sympathize with u !

minniish profile image
minniish in reply to tremarel

thanks, i will definitely go to the doctors and tell my symptoms and relations with IBS.

anbuma profile image
anbuma

my dr says mine is "bloating"but disagree as I DONT feel BLOATED at any time.as my problems began 2 years + ago and no-one would give me any definite answers. all i got was "its your stomach" or "i cant feel any lumps"when i said my stomach was hard and lumpy and sore.he only mentioned " bloating "a few months ago.yet dismissed everything I said.also said I was obese which when I found out I kicked off about it as I am a normal size 12-14 apart from my swollen abdomen which is the only reason for weight gain & has to be a mass of some sort.my abdomen Is sore and painful all the time and I now have pressure on my ribs which is disabling. when i have walked my dogs the last two days the pressure on my ribs is unbearable and it feels like I have been punched in the stomach and cant get my breath.told the dr this on Friday and she said "its indigestion" and to take meds another dr told me not to take anymore .i keep getting told its IBS when I know I dont have IBS as no symptoms and women my age don't get it. i can only eat breakfast and maybe a small meal. feeling "full", bloating and feeling "the need to go" are all symptoms of OC and its known fact that drs regularly mistake OC for bowel conditions.also was irate at the rheumatologist I saw last year a s he dismissed my symtpoms(of lupus?)and kept on about losing weight as I ahd gained 11 kgs in 7 years but refused to acknowledge that it was all abdominal and nothing could do about it.i have not eaten cakes biscuits snacks or puddings for about 4 years so how can I diet??

tracynoe profile image
tracynoe in reply to anbuma

What's OC? Sorry for asking but most of your symptoms are like mine except I am losing weight dramatically and I have never had a mention of IBS

anbuma profile image
anbuma in reply to tracynoe

ovarian cancer.

minniish profile image
minniish in reply to anbuma

Hi, sorry to hear all the trouble you have been though with doctors and confusion. I will definitely look into what you have said. Thanks :)

anbuma profile image
anbuma

is your weight gain confined to your abdomen?

minniish profile image
minniish in reply to anbuma

yes it is. and there seems to be a lot of tension there as well

dgleds profile image
dgleds

yes i get bloated super easy now..horrible.

Im on plaquinil...6 months now....Tonite went for a short walk and it helped for a while.. with the feeling bloated I mean.

minniish profile image
minniish in reply to dgleds

beacause im at uni, i dont seem to be botherd to do to the gym as regularly. i feel that i should definatly make this more as a priority to hope to make things better. thanks.

Lillal profile image
Lillal

If your medication is a steroid then that is what is probably causing the bloating. I'd talk to my doctor about that.

tracynoe profile image
tracynoe

Yes. The problem at the moment is getting worse everytime I eat I get terrible pains in upper abdomen stomach feels full all the time one mouth full and I feel stuffed losing weight dramatically, reflux at it worst so it's also set of my asthma. My GP is keeping a close eye on things at mo but if it carries on he is going to have to ring Rhuemy for advice.

anbuma profile image
anbuma in reply to tracynoe

has your dr told you what it is?had meal at midday and in chronic pain after.like stomach has moved to ribs -pressure against ribs dogs finished my meal.

minniish profile image
minniish in reply to anbuma

no. she just has given me some fibre sachet things to allows to promote bowl movement, hope it helps. she kept asking me whether i'm still eating a healthy and drinking plenty of water and I was like yes.

tracynoe profile image
tracynoe in reply to anbuma

Not at the moment but had exactly same sensation and pain you had but I got it after taking a couple of tablets with water this morning. It is still there but starting to ease going to ring GP tomorrow as weight is now below 60 kilos and its getting worse

Nanuuk profile image
Nanuuk

I found, 18mts ago that I could no longer tollerate dairy & meat would a lso upset my stomach - I blamed the meds for the nausea & diarrhoea & put bloating down to wheat. My weight didnt change with tje diet change but I dropped 2 dress sizes for no longer being bloated!

minniish profile image
minniish in reply to Nanuuk

Hi, I have been blaming my bloating feeling for not tolerating foods like wheat. I will have to see what I can investigate on this. Thanks.

anbuma profile image
anbuma

hi I was having wheat cereals for breakfast every day and stopping them for a month this made no difference to me.i rarely eat dairy,bread(only the rare slice of toast) and never have cakes biscuits puddings and snacks.

dgleds profile image
dgleds in reply to anbuma

same as you...

perhaps lactose / gluten intolerance??

It would be a good idea to ask for an ovary check, as these symptoms can point to problems in that area.

I really hope you get it sorted, as all this discomfort is miserable.

Tonkawoman69 profile image
Tonkawoman69

Hi all, this all seems very familiar. I get bloating and was told im overweight I've put on weight but usually a size10/12 but for a long time I've been trying to lose weight was on steroids last year and that's what didn't help. But like some of you I seem to bloat around my stomach/belly and look 9 months preggy. I get bouts of needing urgently going to look. Just today been 3 times first one was of great urgency and was similar to yesterday but I didn't make it to look yet some days I don't go at all but then can be terribly constipated and not go to the loo for5/6 days which is not like me at all. I was told I had iBS in my 20s. Ivealways been able to control it. I have also had stress incontinence with bladder and I don't get signals to wee I can go for 9 hrs sometimes even when I drink loads just dont get the signals. I retain my urine and have to self catheterise daily. Just all the signals have gone haywire. Does anyone else have bladder issues with their bowel issues?

Andrea x

anbuma profile image
anbuma in reply to Tonkawoman69

did have til I had op to prevent stress incontinence.

jackjack2 profile image
jackjack2

I have the same experience. I am constantly bloated and look 9 months pregnant. It's very uncomfortable x

Reinke profile image
Reinke

I have similar problem with bloating. Have found that minimizing milk products, white flour, refined sugar, high sodium foods have helped as well as trying not to eat much makes me feel much better. I am very sensitive to eating too much... Hard when something is so yummy, but I pay for it after wi the bloating. Honestly, I think I can gain an extra 10 lbs in bloat in one day!!!

minniish profile image
minniish in reply to Reinke

same here, I feel i can never have a treat cause I know I will get bloated over nothing.

anbuma profile image
anbuma

surely something can be done other than starve ourselves.i f cut out wheat and dairy and meat what is left to eat?i have had "no appetite"for about 4 years-just never feel hungry and breakfast is the only meal I can really eat.,,i have only just really started to eat meat in effort to change diet fro better so don't think meat is problem.

Andrewl profile image
Andrewl

Hi, I have this bloating and am also a hughes' patient. I have been told that it will probably be the ramipril which I take to control bp. My haemo specialist reckons that is what causes it. Just another possibility? Hope this helps.

Take care

Andrew

Tonkawoman69 profile image
Tonkawoman69

Well with having warfarin your restricted as a APS sufferer, im not keen on meet so only have my dairy left. I am going to speak to anticoagulant nurse next week who thinks she can adjust my warfarin so I can eat a few more vegetables so maybe I can reduce something else. I've changed milk to soya milk so one move. Today I have been to doctors as have a urinary tract infection and horrible burning and I was pushing some volumes today but now I've slowed again and only managing 50 ml. I rang my urology nurse and she said go up A&E if I cant wee and I cant catheterise later. I just seem to get one after another. Im trying to drink as much water as I can. I just hope things get a bit more normal in my life.

I hope everyone starts seeing an improvement with all the advice on here. Thanks all.

Andrea

KathinAyrshire profile image
KathinAyrshire

To every sufferer that has made a comment and to Minnish I give my thanks. It isn't only me and the GP's dismissal of my problem is not founded!! This is not a problem that is easily discussed and I thank you all.

Reinke profile image
Reinke

Tonkawoman, I also have aps with the lupus nephritis. So limited in what I can eat.... Started to get mini strokes because I became warfarin resistant!!!! Now on fragmin shots daily.... So frustrating

Lupylass profile image
Lupylass

I've come to this a bit late, but wanted to add that my tummy issues got much worse when I came off steroids

My rheumatologist was the one who listened and referred me up a gastroenterologist. I was diagnosed with coeliac disease!

I'd never have said that I reacted to eating bread etc beforehand, but since following a strict gluten free diet I'm much better. Well worth seeing a specialist to find out what's causing your symptoms.

minniish profile image
minniish in reply to Lupylass

thanks for this, will be seeing my rheumatologist soon so will bring it up.

Bebe76 profile image
Bebe76 in reply to Lupylass

I also have Coeliac and lupus. Diagnosed first with Coeliac then lupus 6 months later.

blondie22 profile image
blondie22

Hello minniish.

I have lupus and on hydrochloroquine. I have always had bloated feeling in stomach and looks pregnant. I had a test few years back and it was bacteria in my stomach that went but the last year it has come back worse than ever, had more blood test done a breath test all clear which I don't understand as I know there is somethin wrong and it's not being picked up. I am currently taking sickness tablets and peptol bismol it helps abit but not as I would like it to. I understand where you are coming from. It annoying you don't feel Hungary but you still have to eat and no matter what you eat you feel as If you have eaten an 6 course meal not 1.

minniish profile image
minniish in reply to blondie22

true. totally agree with you. its dam annoying when my mum constantly goes on with me that I need to eat that and drink this. while she doesn't eat as much food as i do... so it gets annoying to constantly tell her to back away and she like no this is good for constipation. its like well mum has it worked? no (sorry i have a constant battle against my mum, cant wait to move out one day)

dgleds profile image
dgleds in reply to blondie22

Pharmacist or chemist..told me that the hydroxychlorquine can bother your tummy...I have mine down to a real low dose now, but still something is up;( BUT, that drug does build up in your system...

Natura profile image
Natura

Just wanted to share that this is happening with me too. I feel bloated after I eat. Cut out dairy and gluten...better, but find that all my problems are connected with a bad intestine and bad liver. Probably born with it. If I take liver help (milk thistle, NAC), it gets better and everything moves. Like the liver working well makes the intestines work. I am still healing my liver and intestines naturally. Not on medication, so medicine, in my opinion, does not cause this problem. I also have trouble breathing, and found that celiac is liver and breathing related. It also explains how I look anemic sometimes, which is also part of celiac. I am just frustrated that this lupus just keeps changing and turning into so many things. I know people don't want to hear this, but a nutritionist told me if I healed my gut, intestinal problems, everything would fall into place. I have hope still, and I am trying a new amino acid to help heal my gut along with chicken bone broth daily. Bottom line, I am exhausted trying to find an answer. It seems we have a genetic predisposition to this disease. We can only treat our symptoms, and help our organs to work better.

grateful for your comments. new to this, Lupus and Plaquenil, and my belly feels as if it is 7 months pregnant, hard (no pain) but feels ridiculous and causes bladder pressure. no fun, but feeling a wee bit relieved to know I'm not insane...just "LUPY" Aloha from Hawaii.

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